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For a few weeks every autumn the news is full of stories from the party conferences of the three main parties – analysis of the leaders speeches (and what they did or maybe didn’t say), rumours of potential leadership bids from political rivals and news pundits trying to ascertain the mood of the conference delegates.

However there is much more to party conference season than the short snippets that get shown on the news. It’s a really important opportunity for us to speak to key decision makers and to talk about the needs of carers.

In September and October Carers Trust’s Policy Team attended the Labour, Conservative and Liberal Democrat Party Conferences in Manchester, Birmingham and Glasgow. Continue reading →

The theme of Carers Week this year is “In sickness and in health.” You can look at that from all sorts of points of view. Obviously the quotation is taken from marriage vows, and for those people caring for a partner, but no less for those caring for parents, siblings, children, or friends, you’re there alongside each other through thick and thin. So the theme of Carers week might prompt you to reflect on the good times and the bad, the positive times and the difficult times. We don’t just discard someone when they’re ill, disabled or frail – we’re in it together.

But no-one’s saying that’s easy, and if you’re the person providing the care, it can feel unending, exhausting and frustrating some days. And things are getting worse- services closing with cutbacks, and less benefit money available. The research carried out for Carers Week found that 84% of people never expected to be a carer – and who does? Caring is something that generally comes unexpectedly – sometimes it happens overnight, or sometimes if develops slowly, depending on the situation of the person you care for.

Many carers feel sad for the different future there might have been, or sometimes the person they feel they’ve lost. Despite this, few carers walk away –not completely, at least although many sometimes wonder what would happen if they did. Carers Week is a chance to recognise the millions of carers who, through thick and thin, good times and bad, are there to care.

Thank you all, so much.

But it’s not just about the health of the person who has the care needs. Carers often put their own health on the back burner. Things need to be done, and perhaps there’s no-one else. So you get on with it, just do it, even though you’re exhausted, even though you’re feeling ill or really low. The problem is that if you’re exhausted, and you get ill, then who’s going to care for you, and the person you care for?

It’s hard to prioritise your own health. Many carers find it hard to take a break and even getting to doctor’s appointments. Having the mental energy to make an appointment, with all the messing about that entails is sometimes just another hassle that carers can do without.

With 10% of the population having a caring role, and the huge levels of poor health within the caring population, the Government needs to address this differently. We need to think of this as a public health issue. We know about lots of factors which make people unwell – lack of exercise, poor diet, smoking, drinking too much, as well as the social factors that are linked to this. The Government realises it needs to address those as they not only cost the NHS but they also on people’s ability to work, and so massive campaigns are funded. But where are they putting the resources in to support carers’ physical and mental health? The kind of money that would really make a difference?

I know there’s not a lot of money about. But saving money at the expense of carers’ health, whilst expecting them just to pick up the pieces left behind by the reduction in services and decimation of benefits, is no kind of saving. Carers already give up so much to help another person. They shouldn’t have to wreck their health too.

There are campaign materials available for carers – template letters/emails to MPs, GP surgeries and for politicians to send to local authorities/CCGs/health trusts etc. Download campaign templates here

For years we’ve been campaigning for a total change to the social care system in England which has been with Government inactivity. But now, there is a chance.

Government health ministers, Andrew Lansley and Paul Burstow, are generally supportive of the recommendations made by the Dilnot Commission. And they would be supported by Labour if they implemented these recommendations.

“…the next time we read about carers breaking down because they receive no support, we will blame you”

But the person we need to convince is George Osborne, Chancellor and the man who manages Conservative political strategy. Implementing the changes would cost £1.7bn p/a which is a lot of money but equal to only 0.25% of total current Government spending.

The message we need to give George Osborne, David Cameron and other MPs is this. If you do not implement these recommendations, then the next time we read about carers breaking down because they receive no support, we will blame you. The next time we read about people receiving shockingly poor levels of care, then we will blame you. The next time we hear of councils cutting vital services because they have no cash, we will blame you.

With power comes responsibility. Osborne and Cameron have the power and the opportunity to improve the lives of millions, they must take responsibility for doing so.

But we each have a role to play. Whether you need social care support now or not, at some point you or your family will. We have a responsibility to our friends and family to make sure we grab this chance for change.

We’re organising a mass lobby of MPs on 6th March. People from all over the country will have the chance to meet their MP in Parliament and lobby for better social care support in England.

The NHS in England is receiving an additional £400m over four years, 2011-15, to increase support for carers but our report, published today, has found that the NHS has not increased the level of spending on services for carers from last year. Indeed, there might be a small decrease.

There has been progress in some areas where local primary care trusts (PCTs) are investing significant amounts, such as £2m, in services for carers in 2011/12. In these areas more carers will access breaks, receive training to help them manage their caring role, and specialist support for carers caring for somebody at the end of their life.

But there are still PCTs (4%) that are investing nothing in services for carers, with another 8% investing less than £100,000 this year. We need these PCTs to look at the fantastic work being done in places like Torbay, Bristol, Surrey and in the South of Tyne and Wear and see the benefits to carers, patients and the NHS itself that investing in carers can produce. Torbay has found that supporting carers has enabled smoother discharges of patients from hospitals, a key aim for the NHS and Dr Thomas, a GP and Chair of Torbay Professional Executive Committee believes carers are a top priority:

“Introducing Carers Support Workers in our practices has produced many benefits. It has facilitated early identification of people who are carers offering them practical and emotional support. As the population ages and more people live with long term disability the support for carers will remain a priority.”

The challenge for Government must be to ensure that with more new money being given to the NHS in 2012/13, the NHS uses it to support carers. I seem to have said this every year for three years but I do think Government will act to push this.

The Health Minister, Paul Burstow, is taking this report seriously and we met with him on Tuesday to discuss our findings. He will act to increase the expectations on PCTs, and on this he has the backing of the Prime Minister who had requested an investigation into how PCTs were spending the additional money.

PCTs are facing a particularly difficult year in 2011/12, including tightening budgets, but the Government has been clear about PCTs’ responsibilities regarding carers. But some PCTs are failing in their duty to carry out what has requested of them. For instance, only 13% of PCTs have published budgets for supporting carers when all were meant to by 2 September.

However, PCTs do not only have a duty to Government, they also have a duty to support those who sacrifice so much to care for others and a duty of care to their patients who are often relying on support from these carers. Too many are failing in this.

The Prime Minister, David Cameron has written to the Department of Health asking them to investigate how the money

David Cameron has been talking about establishing a right to respite for carers

committed to providing breaks for carers is being allocated and used by Primary Care Trusts. He has advised that this is an “issue of personal importance to me” and that “we must support carers who do the most valuable work often at great personal cost to themselves. We must ensure that carers are provided with the support they need.”

Cameron’s intervention came about after a letter from Theresa Villiers MP, who attended our Give Carers a Break campaign launch earlier this year. It also comes after previous Department of Health action on this issue and we await the Department of Health’s response to this request.

Previously, the Department of Health did act after our report detailed the failure of PCTs to develop plans and budgets to support carers with local carers’ charities, as Government requested. They requested that all PCTs advise by 2nd September if they had published plans and budgets to support carers. It was expected that PCTs missed this date only in exceptional circumstances.

Government is now clarifying some of the information returned, and we have also started our review of whether PCTs have published plans and budgets and how much is being allocated.

Government have also said that they will release guidance next month giving clear expectations of how Primary Care Trusts (and Clinical Commissioning Groups, successors to PCTs) should support carers in the next financial year 2012/13.

Whereas Labour are still deciding their priorities, the Conservatives appear to have nailed theirs to the mast. And social care isn’t there.

Eric Pickles MP, Secretary of State for Communities and Local Government began their conference by announcing that

Eric Pickles MP with David Cameron

£250m had been found which would be given to councils for weekly bin collections. Funding for social care comes from councils, and funding for local authorities comes from the Department of Communities and Local Government. So rather than giving this money to councils to spend on social care, the Government are saying it has to be spent on bin collections.

This Government, and Pickles in particular, has been adamant that decisions must be made at the local level, and councils given freedom to decide. Yet, Pickles is not making this £250m available for whatever councils think it could best be spent on; it is only available for councils who want to move to weekly bin collections.

Of course, some councils already run weekly bin collections, and a couple of councillors at the Conservative conference were left wondering whether they should stop that so that they can claim some of the £250m to reintroduce what they are already doing.

This was followed by George Osborne’s announcement that Government had found an extra £800m to give to councils who committed to freeze their council tax rates. Again, this newly found money is not available for councils to spend as they see best but can only be used to compensate councils who do not increase council tax rates.

Compare this focus on bins and council tax to social care. I asked Lord Freud (DWP Minister) and Greg Hands MP (Parliamentary assistant to George Osborne) about how important it was to implement the Dilnot Commission’s recommendations on social care but received no answers. I asked Maria Miller MP (Minister for Disabled People), who said meeting the challenge of our population’s changing demographics was one of our biggest, but instead of discussing Dilnot’s report, focussed on how introducing the right to request flexible working for all will help carers trying to juggle work and care.

Andrew Lansley in his speech did mention the £400m given to the NHS to support carers, but there was no mention of social care or Dilnot. When asked about it, no firm commitments were forthcoming. Understandably, Lansley is focussed on getting his Health Bill through Parliament but we must get the Conservatives to see social care as a priority.

Instead of commitment to reforming social care, there is a reticence emanating from Conservatives. It usually starts with talk of implementing Dilnot being very expensive and a lot of work still to be done. Implementing Dilnot is £1.7bn per annum; the Tories have just found, out of nowhere, £1.05bn for bins and council tax.

Trekkies love it when Captain Jean Luc Picard (Patrick Stewart) orders in a commanding, deep voice “make it so” and in an instant his crew set to work. Mistakenly, we often think that politicians have similar power.

Paul Burstow MP, Health Minister, honestly wants the NHS to do more to support carers. He thought providing additional money (£400m) and requesting the NHS to work with carers’ organisations on plans and budgets would provide this. Of course, our report showed that this has not happened. Burstow told us at the Lib Dem conference that he was upset at this, was trying to improve the situation and will give even stronger guidance that the NHS has to prioritise carers.

But he cannot make the NHS do this because they have local decision making powers and no one person can control everything that happens in an organisation as large as the NHS.

The Government is actually structured so that power is shared amongst many people – Prime Minister, the Cabinet, MPs, Lords and other advisers. Some hold more than others, but each have some power with nobody having absolute power. And they all have their own priorities fighting to be the one Government acts upon.

This is why Burstow has appealed for disabled people, carers and charities to get angry and make a racket of noise regarding social care reform following the Dilnot and Law Commissions’ recommendations. He wants reform and says that he will be angry if the Lib Dems does not make this a priority.

Norman Lamb MP, chief adviser to Nick Clegg, said he wants social care reform in this Parliament and that any reform must mean more money for social care. However, his message was that it will only happen if politicians keep hearing from the public that reform must happen. Otherwise it will slip down the list of priorities.

Cameron, Clegg and Miliband have agreed to cross party talks on social care reform. This is a good start but only a start. The Government have announced another listening exercise for the reform of social care. This can either be used to build consensus on future reform or delay the need for a decision pushing reform further down the list of priorities.

Burstow and Lamb understand the urgent need to reform social care but not everybody does. I was left aghast when John Hemming MP (Lib Dem) said he did not see the connection between reforming social care and helping workplace productivity and employment, despite having just heard from John Lewis Partnership that more and more people are struggling to combine work with caring because support from social services is lacking.

We have to realise that for some, social care reform is not an issue or a priority. We need to change that. We need to make sure leaders and MPs from all parties hear how important it is to millions of people. It’s time to make some noise.

My last blog was about how the value of £10 is different for different people depending on what it enables them to do with it. Then comes research on America and Europe which shows that the richer you are the less likely you are to provide care.

The Kiev Economics Institute found that for every 10% rise in salary women will spend 36% less time providing care and men will reduce their input by 18%. This actually corresponds with research in the UK which indicated a link between earning and whether you give up work to care or not.

Basically, these projects suggest that if you can afford to pay for care then you are more likely to do so, and if you cannot then you are more likely to give up work to do it yourself. Money enables choice. So, should a priority for Government be enabling carers of all incomes to have choices?

Technically, social services should provide care to meet all needs of the disabled or seriously ill person, and should only reduce what they provide if the carer is willing and able to provide certain levels of care. However, the reality is that it is assumed that carers will provide care and social services will only top up on the care that the carer cannot provide.

One woman I know has a husband who has a serious condition. Social services told her that it would cost them over £100,000 p/a to provide care to meet his needs, and that they couldn’t afford this. And despite her being a successful professional, she could not afford to buy enough private care. The solution was that she gave up her job and the council provided support worth about £7000 p/a.

I believe the Dilnot Commission’s recommendations (see previous blog) would make purchasing care more affordable and therefore give more people greater choice about how much care they provide and how much care they purchase. At the moment, being able to choose is too dependent on how much money you have.

This also has ramifications for Government economic policy, which I’ll cover in my next blog.

It was about primary 4 when I got the letter. I’m sure it even had her scent on it. It was smuggled to me in between

practicing our times tables but I don’t think I could have added 2 plus 2 after I received it. What a feeling!

It obviously wasn’t the greatest love letter in history, but then again the Department of Health are not known for their letters of love. But I have recently fallen in love with one letter from them.

It was sent to each Strategic Health Authority (SHA) which monitor the performance of Primary Care Trusts (PCTs). It asks SHAs to confirm with the Government by 2nd September that each PCT has published local plans regarding services to support carers. Missing this date would be understood only in exceptional circumstances.

Furthermore, SHAs must make sure that PCTs (apologies for the acronyms!) have taken into account the Government’s updated Carers’ Strategy which provided an additional £400m for carers in PCT budgets. Sometimes, you wonder what takes Government so long to act but in this case the Health Minister Paul Burstow MP must be applauded for taking immediate action.

On 12th July Rob Wilson MP asked him about his local PCT not engaging with his local Carers’ Centre to develop plans for carers as they were meant to. On 14th July, we published our report which showed that only 9% of PCTs had so far published updated plans and 37% were not planning to.

Paul Burstow and civil servants must have immediately discussed what they could do to improve the situation and drafted the letter that was sent out 27th July. Supporting carers is an issue that Paul Burstow is serious about and this episode shows his determination to improve support for carers.

We have already heard of instances where PCTs are responding and are now engaging with carers’ organisations to develop plans and budgets. I’m glad, because the clock is counting.

To make sure the PCT acts in your area, we’ve set out 5 easy steps to persuade your PCT. Carers are getting breaks in Richmond, Sunderland, Surrey and other places – let’s make sure carers all over the country get them.

I’m Will Davidson, I have been volunteering with the Policy department at The Princess Royal Trust for Carers for the past two months, helping to research how government proposals will affect carers, especially on the issue of Carers Breaks.

Today we launched a report looking at whether Primary Care Trusts (PCTs) have been working with carers’ organisations to develop plans and budgets for carers breaks and if these plans have been published. Late last year the Coalition Government announced increased support for carers by allocating an additional £400m over 4 years to PCTs to focus on providing breaks for carers. They requested that each PCT works with local authorities and carers’ organisations to publish policies, plans and budgets to support carers.

So are PCTs following these guidelines set out by the Government? Do carers’ organisations feel more engaged now than they did before these announcements?

We found that only 9% of PCTs had developed updated plans and budgets for carers taking into account the additional money. 54% said that they would do so during 2011/12, and some very shortly. Carers will be disappointed that many PCTs are still developing plans eight months after the Government announcement and guidance. The remaining 37% said they would not be updating their plans.

For me, the most concerning finding is the number of PCTs still not working with carers’ organisations to develop plans and budgets. 82% of PCTs advised that they were working with carers’ organisations to develop plans and budgets, but carers’ organisations did not agree. 40% of PCTs were judged by carers’ organisations not to have engaged at all to develop plans and budgets.

Having minimal or irregular contact with carers’ organisations, or providing some funding for organisations connected to supporting carers does not in our view constitute real co-production of plans and budgets.

That said the examples in Sunderland and Richmond highlighted in previous blogs show that there is progress being made in some places, and we do think that more PCTs are now engaging with carers’ organisations and funding services than before. But the NHS as a whole has not made a breakthrough in supporting carers. PCTs must redouble their efforts, admittedly at a time of uncertainty for them, and Government must remember its’ responsibility and commitment to carers when considering its response to our findings.